Woman has IDEA
how to depict leprosy
Producers of shows and films
By Mary Adamski
on Father Damien and Kalaupapa seek
advice from Anwei Skinsnes Law
Star-BulletinMovie makers and television producers have sought the advice of Anwei Skinsnes Law in recent months for shows that focus on Father Damien DeVeuster and on leprosy.
Her advice is to look for the heroes, not the horror.
"What I tell anyone, whether it's a student doing a paper or a network news magazine producer, is not to do it at the expense of people who've had the disease, in terms of their dignity or in terms of promoting an outdated image of medical facts," said Law, a founder and project coordinator for the International Association for Integration, Dignity and Economic Advancement (IDEA), an international advocacy organization for people affected by Hansen's disease.
Kalaupapa, the remote Molokai peninsula where leprosy victims were quarantined after the disease became epidemic in the mid-1800s, and Father Damien, who served there for 16 years until his death in 1889, are spotlighted in three Hawaii-based productions:
A movie now under production on Molokai by ERA Films of Belgium, Damien's homeland.
The CBS "Public Eye" show with Bryant Gumbel also consulted IDEA about a story they're filming on the Carville, La., Hansen's disease treatment facility and settlement.
"IDEA has talked to them all. They seem receptive," said Law, who lives in West Virginia andmr6 Anwei
Skinsnes Law
runs the U.S. headquarters of IDEA, most of whose 20,000 members have had Hansen's disease. She was in Hawaii earlier this month to plan the July Honolulu opening of an exhibit, "Quest for Dignity: A Victory over Leprosy/Hansen's Disease." The display that opened at the United Nations in October will be taken to China for the International Leprosy Congress in Beijing.
"We encourage them to involve people who've had the disease. It will only strengthen any film," said Law, who grew up in Hawaii. Her work as a researcher and advocate was set off by her father, the late Olaf Skinsnes, a University of Hawaii pathology professor who founded the leprosy laboratory at Leahi Hospital.
She said to tell the story of Damien showing the people he served as simply pitiful and helpless recipients is the totally wrong spin on a powerful story.
"What anyone who knows them (Hansen's disease patients) knows is what you get back is far more than what is given. That was true of Father Damien and Mother Marianne Cope. They were inspired by the people they met."
The legacy of Damien is that there is less stigma in Hawaii because Kalaupapa residents have done admirable things.
"I'm worried what comes out (in films) will set us back in our thinking," said Law.
Viewers needn't expect to wallow in details of history when the IDEA exhibit comes to Honolulu Hale July 1-15. It's a collection of quotations and pictures of people from around the world -- including Kalaupapa -- and a record of their achievements.
"We have to get people into this century," said Law. "There are still a lot of people who experience unfair and unjust attitudes. It won't change if no one is listening to them."
Mandatory quarantine ended in Hawaii in 1969 but continued in some other countries. Not until 1996 did the law get changed in Japan that isolated patients in sanitariums and required them to be sterilized. Societal attitudes in that country still prohibit a patient's ashes from being buried with those of family members.
Law said sensitive depiction of leprosy patients in the current movies can have an impact in changing the lingering stigma and social isolation.
